Public Charity

DYSTONIA MEDICAL RESEARCH FOUNDATION

DYSTONIA MEDICAL RESEARCH FOUNDATION, of CHICAGO, IL, is a Public Charity tracked in Imperigo's IRS 990 database. The 2025 filing shows $3.7M in revenue, $3.2M in expenses, $7.1M in total assets. 79 publicly reported grants to this organization, totaling roughly $3.8M, appear in IRS filings.

EIN: 953378526 CHICAGO, IL Brain Disorders Research NTEE: H48 Latest filing: 2025
Total Revenue$3.7M
Total Expenses$3.2M
Total Assets$7.1M
Grant Records79
Funding Total$3.8M
Filing Years2021–2025

Mission

THE FOUNDATION HAS THREE MAIN PURPOSES: (1)TO ADVANCE DYSTONIA RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR ALL FORMS OF DYSTONIA; (2)TO PROMOTE DYSTONIA AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS, BY EDUCATING MEMBERS OF CONGRESS ABOUT DYSTONIA AND THE NEEDS OF THE DYSTONIA COMMUNITY, BY ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3)TO SPONSOR DYSTONIA PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND PROMOTION OF VIRTUAL EDUCATION MEETINGS AND ELECTRONIC SOCIAL NETWORKS FOR DYSTONIA-AFFECTED PERSONS AND FAMILIES WHO ARE UNABLE TO ATTEND MEETINGS.

Where $100 goes at Dystonia Medical Research Foundation

How Dystonia Medical Research Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 8 years.

$81 Programs the work itself
$10 Management running the organization
$9 Fundraising raising the next dollar

Inside the $81 for programs

$55
PROGRAM
68% of program spending
$20
Program
24% of program spending · Reported in the filing: 55,000 patients
$4
Program
5% of program spending

Plus 1 more program. Cost per person served and the full program breakdown are on the full profile.

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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

Director Allison London
Director Art Kessler
Vice President Barbara Kessler
Director Bill Mclaughlin
Director Brian Keane
Vice President Carole Rawson

Officer compensation and complete director data available with membership.

Top Grant Purposes

Research & Policy
$2,085,899 12 grants
General Support
$1,264,964 46 grants
Health & Medicine
$388,860 16 grants
Education
$32,750 1 grant
Fundraising & Sponsorship
$5,700 1 grant

Financial Trends

Year Revenue Expenses Assets
2025 $3.7M $3.2M $7.1M
2024 $3.2M $3.0M $6.4M
2023 $3.0M $3.4M $6.4M
2022 $2.6M $2.5M $6.3M
2021 $2.9M $2.5M $6.9M

Between 2021 and 2025, reported annual revenue grew from $2.9M to $3.7M (+24%), with total assets most recently reported at $7.1M.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for DYSTONIA MEDICAL RESEARCH FOUNDATION

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